Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

You tell me that you get it . . .

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You tell me that you get it. But do you?

All you see is us with our four children, living in a house with a swimming pool and owning a large car. We have a dog and we take our kids on some pretty memorable outings each weekend. Once a year, we go on a pretty unforgettable family holiday. You see our children are happy. You see us letting our eldest son eat a steak or oysters. You see us at Disneyland, or snorkelling on the Great Barrier Reef. You see us going to the rugby and meeting the captain of the Wallabies. You see us give our kids wonderful birthday parties, and cameras as presents. You see us getting the best parking spot, right at the door whenever we go out. You see us receiving special treatment by airport staff, and being given a quick exit past the crowds. You see the wonderful photos we post, where we all look like we’re having a great time. You think we live beyond our means. Maybe we do.

But you don’t get it.

Young boys are dying from Duchenne. Not in their 20’s, but at 10 or 12 or 16.

James is 10. He’s middle-aged.

Imagine knowing your child was already half way through their life at 10, possibly even towards the end of their life? What would you do? Would you work long hours in the city, and spend valuable time commuting there and back? Would you miss out on those important years in your child’s life whilst he is still able to walk? Still able to use his hands? Would you honestly feel good about yourself knowing that, when he’s gone, you spent all that time somewhere else? Missing out on those last moments that you will never get back? Will you just let him sit at home every school holiday and not use that time to help him build a bank of memories? Or give him to someone else to look after during those holidays? Would you?

We’ve been asked why his mother doesn’t work. The truth is, she does. She works hard every day on a business she hopes will eventually bloom and flourish, a business that she can work around the needs and demands of her son. You see, we are on the tail end of the honeymoon phase. This is as good as it will get, and this is as good as we will ever see it again. Duchenne is progressive and degenerative. That means he gets weaker, day by day. Each day, he needs more and more help, more support. He tires when he writes. He tires when he walks. He tires when he sits on the sofa. He tires when he eats. He tires when he talks. Eventually, he won’t be able to do any of that himself. Eventually, he will be too weak to even lift his hand. So for her to have a “normal” job is not possible. We don’t have family or friends who we can rely on to help us. It’s just us. We get 6 hours per week where a Disability Support Worker comes in, who massages & stretches James’s legs. But who will look after him if he gets sick? If he is in hospital? During school holidays? Or take him to the many specialist and therapist appointments that he needs? Who will look after his siblings whilst his father takes him to hydrotherapy each afternoon? Have you ever thought about that? We are both working towards a solution that will see us able to care for not only our son with Duchenne, but our other unaffected children as well.

I’m sure there will be those that say that schools provide holiday programmes for kids whose parents work. But no matter how many times we tell others how to look after him, no one knows how to do it all. Not everyone will look at the ground where he is walking, to see if it’s level. Or make sure that he’s not running. Or help him in and out of a car or a seat or his wheelchair. Not everyone knows to watch him when he eats, as he is a choking risk. Not everyone knows how to give him his medicine, which needs to be taken at a particular time every day. Not everyone understands the help he needs with toiletting, or getting changed. Or putting on his shoes. Not everyone understands how serious it will be if he falls and breaks a bone. Not everyone understands that a simple broken bone could result in death for him. Not everyone understands the fear we have each time he is exposed to a child with an illness, knowing that his immune system, respiratory system, and cardio system are all weak. No one understands the range of emotional and behavioural issues he has, which often impact everything we do. No one understands the abilities he does or doesn’t have. Not even family. The only people who truly understand what looking after him entails? Us. His parents. And there is no way in the world that we will put his life at risk by allowing someone else to take on that responsibility.

People say they were shocked that we took the entire family overseas to America last year, and that we should have only taken James. Really? Would you take only one child on a “holiday of a lifetime” and leave your other child/ren at home? When their lives are so compromised as well? We can’t take our kids on spontaneous walks on the beach, spend a day in the surf, go snow skiing, or hiking, or bike riding. We can’t go on adventure holidays together. And if we can’t do it together, then we don’t do it at all. Already, James is excluded. He is excluded from many school excursions as they are not suitable for a child in a wheelchair. He can’t take part in school swimming carnivals or sports carnivals. He is left out of soccer and football games, sitting on the sidelines and watching with a look of sadness on his face. He plays on his iPad. By himself. He plays xbox. By himself. He goes to hydrotherapy. By himself. So why would we extend that exclusion to his holiday of a lifetime? He hates not being like the other kids. He hates being “the odd one out” or “special”. When we talked about going to America, we said it was a trip for him. And he turned to us and said “No, it’s not for me. It’s for all of us”. He wants to be included. He wants to fit in. And most of the time that’s not possible. But with a family holiday, there was no way we were going to exclude any of them. Not James, from having a holiday with his best friends, his siblings. And not the other 3 kids, who miss out on so much as well. It was the holiday of a lifetime. A family holiday of a lifetime. I’m sorry if you can’t understand the importance of that. As I’ve already stated, you don’t get it.

Someone recently told me that we are coming to the end of the “honeymoon” period. James is transitioning from walking to coming off this feet for good. This is a difficult time. His meltdowns are frequent, his frustration abounds, his anger is constant, and his sadness is always present. Have you ever thought about what it would feel like to see your child losing all abilities, and start relying on you for everything? Does your 10 year old child need you to wipe his bum or dry his balls? Probably not. And if he did, I’m sure he’d feel pretty embarrassed, especially knowing his friends can do it all themselves. Imagine being 10 years old and probably never going on a sleepover, unless mum or dad can come along. Or going on a school camp without a carer. Imagine knowing that the day you turn 18 (if you get that far) will be spent with your friends helping you to drink a beer through a straw, because you can’t lift the glass to your lips. Imagine hearing your child talking about what sort of car they will buy when they grow up, knowing they will never get their drivers license. Or hearing them talk about what sort of daddy they will be. It makes my heart hurt, just thinking about it. Knowing he will never be able to do those things. Imagine KNOWING that your child is going to die, but first their bodies will completely waste away until they are basically quadriplegics. Except these quadriplegics can still feel your touch. Imagine knowing that you have to plan your child’s funeral, before they even become an adult.

Here’s the crazy thing though – some people have actually been jealous of those few things we have experienced. Our Starlight Foundation trip to the Great Barrier Reef, our trip to Disneyland, free tickets for one of us into theme parks, and then quick access onto the rides. And let’s not forget disabled parking, which is situated nice and close to all the action. Oh yes, and we get to board the aircraft first and have priority seating on public transport. But what you seem to forget is that we would give it all up, every single thing, for a healthy child. Most of you are lucky, most of you will never have to even think about how blessed you actually are. In our life, we have to research and thoroughly review any place we stay when on holidays, as it has to be wheelchair friendly. That sort of accommodation always cost more. And a wheelchair-accessible vehicle is prohibitively expensive. Most playgrounds don’t cater for kids with disabilities (although there are many popping up that are very autism-friendly). Visiting friends and family will become a thing of the past, as most homes will not be wheelchair-accessible. The same goes for parties and other outings. Unless family come to us, we won’t see much of them. We have to fight with ignorant people who think disabled parking is for anyone. And then abuse us when we pull them up on it. I’ve even been abused for using a disabled parking spot with my son, because “he needs the exercise anyway”. And then we have the issue of toileting in public. Usually there is only one disabled toilet, and it’s often used by able-bodied people who find a usual toilets an inconvenience. They forget that their convenience is our inconvenience. The way I see it, you take the good with the bad. But I would happily park miles away or pay full price if it meant my son no longer had Duchenne. But he does. And that isn’t going to change. Although our many Facebook posts show a family living a great life, the truth is that we only allow you to see what we want you to see. No one wants to read constant sad posts. But the reality is, we cry. Every night. And have done so every night since he was diagnosed.

Your perfectly healthy children have the rest of their lives to experience life, in all its glory. They will graduate, fall in love, travel, have children, and experience many many things over a period of 60+ years. But if you knew they only had a few more years, I’m sure you would try as hard as you could to pack an entire lifetime into the time they have. You would let them eat steak and oysters, knowing that eventually they will lose the ability to eat food that doesn’t come in a tube. You would organise for them to swim with dolphins, fly in a helicopter and airplane, ride a horse, go to Disneyland, snorkel, meet the prime minister, and snow ski. You wouldn’t let them sit around whilst you work your butt off to ensure financial security in the future. Not when there is possibly no future. You have to do it now. You would try to tick items off a bucket list, so that they will have lived an entire lifetime by the time they die. Everyone should be able to die with more memories than dreams. That’s what we are trying to do.

We are not an ordinary family. We are an extraordinary family, trying to give an extraordinary boy an extraordinary life.

You tell me that you get it. But you don’t.

And I’m glad you probably never will.

 

  • Alan Englefield - I get it!

    Believe me, I get it.

    As a father of a DMD lad myself, I definitely get it. My wife was a carrier but we didn’t find that out until her sister’s boy was diagnosed at aged 4 and we were pregnant with our 1st.

    Now here we are, 5 years later with 3 DMD boys in the family aged 9, 5 and 2. (ours and my sister -in-law’s 2)

    I love your posts and can’t wait to read them each time they pop up in my inbox even though they always make me cry.

    I can’t type any more through the tears but believe me when I say; I, for one, “get it”

    AlanReplyCancel

    • Sharyn Thompson - Alan, thank you.I’m sorry I made you cry, but they say crying is cathartic. Apparently. My love to you and your beautiful (extended) family. xxxxxReplyCancel

  • mindy b. - Oh Sharyn … you have my love. From the bottom of my heart, I wish things could be different for James – for all of you. It’s heartbreaking, and for those who judge what you do with your family and your time? The hell with them. XOXOXOReplyCancel

    • Sharyn Thompson - Mindy, my friend. I love you. xxxxReplyCancel

  • Rob S - Beautifully written, just wish you didn’t have to write it xReplyCancel

  • Letitia - This is one of the saddests things ive ever read…and my heart hurts….for all of us… everyday..my Son is 10 as well…with DMD…hugs xoReplyCancel

    • Sharyn Thompson - Letitia, your son and mine are 10. We are no doubt going through very similar times with them. This is a difficult time as they transition. Big hugs to all of you. xxxxxReplyCancel

  • Jackie - Ty for saying exactly how we DMD families have felt. Your words are spot on. My oldest son who has DMD is 24, is trached, on a ventilator, and has a gtube. Hugs to us all that “get” it.ReplyCancel

    • Sharyn Thompson - Jackie, thank you. Much love to you and your son. And all of your children. xxxxReplyCancel

  • Gauri - Dear Sharyn, my heart hurts for all DMD parents and kids. My son is 3 (DMD) and I know that there are lots of things he can still do, but I know that with every passing day his muscles are wasting. I wish I could freeze time. I can see a vast difference between his abilities and able-bodied kids. Your thoughts resonates with my emotions. Thank you for summing it up. We have to do what we think is best for our kids, our family. And hell with the people who try to judge us.ReplyCancel

    • Sharyn Thompson - Gauri, thank you for your comment. Your son is 3, so you have much to hope for in the future. My son is 10 and it’s now starting to really affect him. But 7years is a long time in the field of research. That said, there is still the fear and the emotional/physical/financial toll on any family with a child who has a chronic illness. My heart goes out to you and your beautiful family. Just keep on doing what you are doing. xxxxxReplyCancel

  • Michele Perry - Sharyn: Thank you for posting my feelings. I DO GET IT!!! You put our life on paper, so eloquently and precise. THANK YOU THANK YOU AND THANK YOU!! Love to you and your family and especially James!ReplyCancel

    • Sharyn Thompson - Michelle, my friend. Thank you. Much love to your family. xxxxReplyCancel

  • Dennis mclaughl - Here here and well voiced good luck and god bless on your journeyReplyCancel

  • Angela Rogan - Thankyou for saying it just as it is, my son Jamie is 10 years old too with DMD xxReplyCancel

    • Sharyn Thompson - Thank you Angela. Our sons are the same age, so we are probably going through very similar times. Hugs xxxxxReplyCancel

  • Sam & Amanda Mason - Beautiful and eloquent, pissed off and heartfelt, My wife is a carrier, I am the stepfather, now having said that those are my 2 boys, Christian who is 10 and does not have dmd, and little Riley bugs who is 4 and does. It is a very devastating genetic disease, I say this because like you when my wife and I got together it was and is a package deal. The bond Riley and I have no one else can explain, we are kindred soulmates and we both know it. I would gladly give up everything to end it for him, to cure it for him and all of the others. I have studied as much as I can, learned all I can, and continue to be a part of each and every bit I can. They will never get it, but I have an entire family spread across the world who does. I am in a few father groups, science groups, treatment groups, and constantly get updates on the latest news and advances. Riley is not very symptomatic yet but each day we watch him struggle, we watch him slowly get worse and it breaks my heart, I Get It and I thank you for saying what we all feel.

    Sam Mason
    Ringgold, GA, USAReplyCancel

    • Sharyn Thompson - Sam, in my opinion you are awesome! Not only have you married a woman with two boys that are not biologically your own, but to be such a wonderful father to those two boys is incredible. It takes a special person to take on the role of parent to another person’s child. Apparently. (I would do it in a heartbeat). But to then be so active in learning about his disease, to keep up to date on the research for duchenne, is amazing. You are not a stepfather, you are a dad. You are more of a dad than so many biological “dads” are. My hat goes off to you, i wish there were more people like you in this world. Love to you and your beautiful family. xxxxReplyCancel

  • Cathy - I totally get it. We have been through all of that with my son who has a bmd/dmd phenotype and is now 18 years old. we have tried to give him great memories, without him becoming a spoiled child. But I agree wholeheartedly I would give up the close parking space and other “privileges” to have a healthy child, I just wish more people “got it”ReplyCancel

    • Faith - I get it. Am 24 with LGMD. You read my mindReplyCancel

    • Sharyn Thompson - If we keep putting out there how it really is, people will eventually get it. At least I hope so. Unfortunately, you can’t change “stupid” so there will always be some who have no idea. As for spoiling our children, how can they ever be spoilt when they have diseases like Duchenne? A parent with child who all have a clean bill of health is spoilt, in my opinion. Hugs xxxxxReplyCancel

  • Laurie - Wow. Thanks so much for that. We are a Duchenne family too and we get it. Thanks for helping others get it, too.ReplyCancel

    • Sharyn Thompson - Laurie, thank you for your kind comments. I’m sure you are the most awesome mummy to your family. xxxxReplyCancel

  • Gail - People can be so cruel when the bottom line is it’s none if their business anyway! As a mother my heart breaks for you, James and your family and I do get as much as is possible not having a child with DMD. However, I did have a son that was very sick in his early years and people, even family, never did get what we and he went through on a daily basis. I also have a cousin with DMD that has now lived much longer than his doctors ever imagined. It has been gut wrenching and inspiring to watch him grow up. He’s an awesome young man who has never given up hope that a cure or at least a medication to bring about remission will be found in his lifetime. He comepleted high school, then went on to earn his associates degree so he could prepare for a career. He had planned to earn his batchlors and even dreamed of his getting his masters degree before DMD finally destroyed him to the point that’s no longer possible. You are so right to allow your son to do and be all that he can while he can. No matter how long he lives, as long he has lived a happy rewarding life he and everyone around him will be richly blessed. You just keep being the awesome mother that you are and don’t let ignorant people get you down. In fact, the only people you have to be concerned about are your wonderful children and husband. I pray God’s riches blessings on you and your family. 🙂
    GailReplyCancel

    • Sharyn Thompson - Gail, thank you for telling me about your cousin. Hearing about him living life and still doing so much fills me with hope. And hope isn’t a word I usually use as I’ve been let down way too many times. Thank you for your kind and wonderful words. xxxxxReplyCancel

  • julie - everything youv said is right, my son died at the age of 18, it was very hard work, but id do it all again, he was a handsome young man, who will always be in my heart,we spoilt him it was always like Christmas for him because we had to cram so many Christmas,s into such a short time, its such a cruel disease,ill never get over my loss. when my son passed over a part of me went with him, every day my son is on my mind, and its 18 years now, and still devastated with my loss, make the most of your son,people criticize , and don’t realize the severety of the disease they should be ashamed , lov to you all,,, god blessReplyCancel

    • Janna Swanson - I want to say thank you so much, I’m a mother of a son with special needs (he doesn’t have DMD, but with my son’s disabilities we where told he will eventually lose body functions and yes could possibly die) and everything you wrote so hits home, I’m a stay at home mom so I can provide the 24hour care my son needs, and I am always judged, called lazy and selfish. I think it’s sad how ignorant people can be, you are amazing parents, with an amazing family. Thank you for speaking out and sharing your story.ReplyCancel

      • Sharyn Thompson - Thank you Janna. I’m sorry that people mistakenly judge you as being lazy and selfish. But you and I know better, and no one can make us think any different. Big hugs to you, you are doing the best job you can. xxxxxReplyCancel

    • Sharyn Thompson - Julie, I am so sorry to hear about your son. 18 years is way too young. You sound like you gave him the best life possible, and no one could ever judge you for doing that. Big hugs.xxxxReplyCancel

  • Lisa - I GET IT!! My son has cerebral palsy and cortical blindness. We have to help him shower, wipe his butt, get him dressed etc. I went back to school to become a physical therapist to help him when he started school. I know the deep sadness, depression that comes with having a sick child. I know the feelings of desperation and anxiety. I know the fear of what the future holds for him, especially if I a die before him. I know the endless doctor visits, surgeries and medications! I know, the feeling of helplessness ! I know the stares and comments from strangers who assume (mistakenly) that we get money from the government to take care of our son! I know the feeling of loneliness and abandonment by former friends who don’t understand. I know how plans have to be made way in advance to go anywhere. I know the bathroom ing issues in public places and families homes. I know how your heart breaks when they cannot do typical things. I know………..ReplyCancel

    • Sharyn Thompson - Lisa, big hugs. You sound like a wonderful mother. Your son knows it, and anyone in your shoes know it. There are some of us out there who truly get it. xxxxxReplyCancel

  • Trish joy - I am so sorry you have to go through that, I know it can be beyond hard. I may not have a kid with dmd or dmd myself but I have multiple chronic diseases that have no cure. I have to take more pills then my 88 year old grandma and have had to for too many years and I’m only 26 exactly today actually! I get it from both a parents side and the kids. I get the depression, the pain, the looks and the worst part is my mom never believed I was sick growing up so I was in agony and had to wait till I could drive so I could take myself to the doctors which I hated with a passion at that point, now I’m sadly far too used to it all. It’s hard not going to lie it sucks and it takes a very strong person to deal with any of this. I think your a incredible person and mother, wish every kid(s) had as great of parents as y’all. My rant is done lol goodnight everyone!ReplyCancel

  • Victoria - You covered it all. I know this because “I get it.” My love and prayers to you all.ReplyCancel

  • Bonnie - May God’s Richest Blessings Rest Upon You And Your Family

    May He Bless You With His Mercy Grace And Strength To See

    You Through Each And Every Day.

    !!! GOD IS GOOD AND HIS MERCY ENDURETH FOREVER !!!ReplyCancel

  • Carrie-Anne o'neill - I get it !!! My brothers had duchenes and we did all the things in your poem and I am a carrier of the gene and thank my lucky stars that my son is healthy so I don’t have to go through what my mum went through and not have to put my daughter what I went through as a sibling you become jealous of the attention they get but when you realize what will hope. To them you feel guilty for being jealous xxReplyCancel

  • Jenny - Hi, My youngest daughter has a shortened life span due to a mito disorder. I know exactly where you are coming from. Some of the ignorance out there is horrible! Luckily I have ran into some really great people too. Sending you all hugs!!! I think the most frustrating part for me is the lack of changing areas for her. She has out grown the changing tables so now we have to get creative. You are a great Momma not to let these things stop your family from having fun.ReplyCancel

  • Tracy - I so get it I really do im a mom with two boys who have duchennes..I love ur post well written…nobody will ever understand what we go through everyday!ReplyCancel

    • Sharyn Thompson - Thank you Tracy. No, no one will ever get it unless they walk a bit in our shoes. Unfortunately. xxReplyCancel

  • Patricia - Very poignant. I don’t have any children with a disease, but I have great empathy for your suffering. I believe these children have a special purpose here & they should know what God has planned for them far exceeds anything in this life. You are doing a great job & God bless you for it!!ReplyCancel

    • Sharyn Thompson - Thank you so much Patricia. We, personally, don’t believe in God, but I appreciate your sentiment very much.ReplyCancel

  • tang - Thank you for posting my feelings. I feel the same way but could never find the right words to describe my feelings and frustration. I get it. Believe me, I get it.ReplyCancel

  • Tracy - As a mom with two boys with Duchenne I really do get it..people say they understand but really they dont get it and it gets so upsetting when u have to see ur children getting weaker each day…it breaks my heart that there is nothing we can do but sit and watch this terrible disease take our children!ReplyCancel

  • Christine Waggoner - Are you able to participate in any of the Duchenne clinical trials?ReplyCancel

    • Sharyn Thompson - Hi Christine, James has been on the Ataluren drug trial since March 2014.ReplyCancel

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